Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Sunday, March 6, 2011

A Life Worth Living

One of My first experiences with cancer happened when I was in the fifth grade.
My friends', a set of twins, mom was battling leukemia. She'd had several transplants, and she was going for a third in Seattle. 
The two of us share similarities, one being, I'm told since her picture is vague in my head, that I look very similar to she had.
Lynn was married with four young children ranging from 4 years old to 14. She'd been an RN in her "previously life" before her diagnosis.
She also lived within the radius of our suspected "cancer cluster" that began 20 years ago.   
Also like me, Lynn couldn't hold her health insurance when she was not working and Her husband was self employed as a carpenter.
 Even 15 or so years ago, the same problems I have now existed. 
Her transplant would cost more than $200,000 of money the family did not have. 
Luckily, The community rallied in support, raising money so the family could travel together. The kids, now grown, and still much loved friends, remember sleeping in hospitals like sleepovers.
They reassure me, for X's sake, that they only remember the good times.         
 I don't remember anything regarding her treatment or even her being sick.  I remember her looking healthy and smiling. I remember going apple picking and talking to the twins on the phone nightly.  
 I also remember conversations I was not supposed to be privy to at the tender age of 10, but I overheard it anyway and what I heard shocked me.
There were whispers about how the family had used the donated money inappropriately, that it should have been used to put food on the table for her children.
What had Lynn done that was so inappropriate?
After the third transplant had clearly failed, but while she was still in relatively good health, Lynn and her husband to an escape to Hawaii.
 It must have been on her "bucket list."  Maybe, the couple wanted a final memory, a last goodbye, closure to a marriage that ended far too soon.  I remember empathizing with her decision.
"How could she?!" people whispered, "when that money was to be used to put food on her table!"
 I still remember those words.
 I still remember thinking, "She's dying. Can't a person get a break?" 
This judgement placed upon her while she suffered has haunted me since overhearing the conversation as a ten year old. Who knew it would be a defining moment in my life? 
It absolutely haunts me now that I've been in her position so many times, feeling bankrupt, stressed and crying when I know that is also bad for my health.
I greatly appreciate everything anybody has ever done for me or my family, but I know this may come with a price. I'm hurt by the possibility that judgements like this may be passed upon me.
I am trying to live my life transparently to repay all those who have helped me. I advocate, write and work so the world will hopefully be better, be cancer free, and that no one will have to beg their community for assistance or feel guilty taking what could be a fabulous memory in a life cut short too soon.
Lynn was fortunate to have the many loved ones who granted a final wish and made her life comfortable towards the end. 
And I understand her choice, I know if I stop doing what I love, what we dreamed of doing as a family, I am not a survivor. The cancer has won. It has taken my life, it just hasn't killed me yet.
 What I am doing in fighting my cancer is fighting for a life worth living.  
I'm singing like nobody is listening. I'm dancing like nobodies watching, and I'm loving like I'll never hurt. 
I am so happy to have made it this far, and I'm so thankful to all the people, too many to ever mention, that has made this possible.  

1 comment:

Anonymous said...

I so admire you Hill, for posts like this one. You make us face up to tough situations. I hope that no one ever sits in judgement of you for the way you have fought this terrible disease ... well, I should be more precise ... that no one ever judges you negatively. There are people like me who judge what you do & admire it.

Be well ... stay strong ... & know you are in my thoughts.